Who knew? Chapter 1: La, La

A bird doesn't sing because it has an answer, it sings because it has a song.
Maya Angelou

April 27, 2008 - Years since my first brain surgery (August 13,2003) and coma and I sang my first song. Of course only I knew I was singing “Think of Me” by Andrew Lloyd Webber because I still have a voice and speech impediment called dysarthria. I used to practice this song at The Royal Conservatory of Music in Toronto. I was also asked to sing a song from the musical, Phantom of the Opera, where this song is from, as a guest star with Bitch Diva (Michael Fitzgerald) at Pimblette’s in Toronto. So what precipitated my singing? Well all I can say is it was Andrew Lloyd Webber night on American Idol (2008), which I watched, and a young girl singing prodigy (Nicki Yanofsky) sang the National Anthem at a hockey game that was playing on the television at a restaurant I was at. This really agitated me. I sang in the shower the next day. Later on I sang “Think of Me” from Phantom for my parents and asked them to identify it. My father got it but he said it took a lot of skill. I know I sound awful now so I have to re-configure the experience of singing as something I am doing for myself. I have known for a long time that singing for me was personal but it took a while to absorb: To not give a hoot who heard me. Billie Holiday said; “I hate straight singing. I have to change a tune to my own way of doing it. That's all I know.” I guess that I am singing my own way now.

As I said in You Never Know: A Memoir, it was horrible for me to sing in front of my nephew, Eli. Now I sing Happy Birthday. It still sounds awful but at least I try, eh? I started to practice “Think of Me” in voice therapy in addition to other songs.
Initially, I was concerned my speech/voice pathologist would have difficulty understanding me but she thinks it is an amazing exercise and good for my vocal chords. Who can argue with that? I do not miss singing now but it is like breathing to me. I often hear others sing who are not as good as I was but are now much better than me. I often wonder at the comparison and irony of the situation. If I dwelt on how unfair it was I would be doomed to bitterness. As it stands, I love it when other people sing around me. I only hope they remember I used to sing professionally. I do not want them to stop at all; I think it is more about validation.

I watched the film The Diving Bell and The Butterfly . I used to use the commonalities between us a lot before I saw the film – he wrote his book with one eye that blinked letters and I write my books with one severely bent finger. We both had brain trauma which landed us in the hospital and changed our lives. The gorgeous Jean-Dominique Bauby, AKA Jean-Do Bauby, the former editor of French Elle magazine had Locked-In Syndrome, had one eye sown shut and had a twisted face. He was essentially paralyzed from head to foot: “On December 8, 1995 at the age of 43, Bauby suffered a massive stroke. When he woke up twenty days later, he found he was entirely speechless; he could only blink his left eyelid. This rare condition is called Locked-in Syndrome, a condition wherein the mental faculties are intact but the entire body is paralyzed.” In the film, which may or may not be an accurate portrayal, he is very bitter and there is a marked before and after quality. I am far from bitter and regard my body now as an evolution or a progression.

The pictures I have of “before” are still me, they are not an avatar. An article entitled, “Avatars for the wheelchair-bound: The value of inclusion in digital spaces,” (Theory and Research in HCI.) explains what “Avatars” are; “Avatars are the representation of the user within digital spaces, and can range from flat, non-animated pictures to pseudo-3D models that explore virtual worlds.”

My history is mine. I looked at older photos for a television broadcast and came to this realization. I majorly had to revise what image meant for me. It is an ongoing process and is definitely one of my challenges. I regard my issue as an opportunity to reconstruct my relationship to beauty in practical terms. My ideas are made concrete. So for the time-being I shall stop the false comparisons. I am not only my physicality.

Some children were watching a CD Rom I gave to a physical therapist that was like a mini documentary. It had stuff I did before on it – some acting and singing – and me now. For the children there was a clear demarcation and some wondered aloud who the “girl before” was. When they discovered it was me, they were incredulous and wondered if I would return to how I was. I know I have gone through a long process regarding my current physicality which most people have not gone through at all. For me to see a continuity now rather than a clear marker is substantial. The children's frank honesty is probably what adults think as well. I remember a camera-person was looking at an old photo I have on my wall with my grandparents. He wondered who that person (me) was. A new attendant was also looking at pictures and assumed I was my mother.

Tamara (speech/voice pathologist) says that there are many ways a person can look different. I wear glasses now, my hair is longer or shorter, I am older etc. Still…A computer technician saw an older picture of me on my computer and asked if that was me – Look, there definitely is a before and after quality to me and I think I would be delusional not to see that. It is difficult for me to be on the opposite side of the spectrum from where I was image-wise but I can do nothing about it. Interesting lesson though. I certainly do not want to misrepresent my looks but I am getting conflicting feedback. Some people acknowledge a shift while others say that I am not so altered.

I am now a different version of the old me. To move on it is necessary to accept the present changes. Of course, I would like to have my old voice and looks - but I do not. I can still communicate – differently. Opting out of image-ideology is so hard for me, but really I have no choice. I have agreed to do a documentary and maybe showing people one can get past challenges will help. Going on camera looking and sounding like this is very hard - but it is worth it if I can reach people. In the Wizard of Oz (1939, Victor Fleming) a curtain is removed to reveal what the actual Wizard looks like. The camera is lifting my curtain.

I do enjoy it when people see what I have done but I keep thinking that my writing right now is equally and maybe more, incredible. My physicality is diminished but in other respects I am achieving quite a bit.

That people regard their working physicality as “better” is kind of odd to me. My parents were at a party and some people compared me to their son who has major mental problems. There is no comparison. I understand that people who need to overcome challenges become a sudden comparison. We all have challenges though. I might need assistance to do certain things and my physicality has changed but really. I got a letter from someone who “wished he had half of the brain I have.” While I feel humbled by his suggestion, there is validation. No matter that I had brain trauma I am more than capable.

Some people wonder if I am sad, depressed or feel a sense of longing when I see old videos of myself. Honestly, I am fine. I used to have major issues about the way I look but there is a sense of pride in people seeing what I have done. Not half as many persons would have been privy to the old me. Even if my lessons are that I was beautiful and talented – which I did not see – I feel privileged for the awareness.
My positive attitude continues to surprise most everyone – including me. There is so much I could be broken about. I was so upset about not getting closure on one of my brain surgeries and my coma that I was sinking into a depression. I could have stayed in that feeling, and this might sound crass, but I chose not to. I honoured my feelings, which have not suddenly disappeared, but I decided to focus on other things. The hell of sadness was something I did not want to add to everything else. Sadness is not a choice, one cannot turn it on or off at will, but for me there was a limit. If I focus on the negative I could bury myself in a hole. I could do drugs, avoid people, and not write books. Hide.

Since appearing on TV for national broadcasts, I take pictures. (My speech/voice pathologist, Tamara, thinks appearing on TV, doing an interview, is remarkable considering I would not use the phone with her 2 years ago.) I might have had substantial concerns with the way I looked or sounded on TV but it was more important to me to reach out to people. Pictures now are less about how I look, and much more about creating memories.

I do not have one picture with my nephew Eli as a baby because I was exceedingly self-conscious about my appearance. I have a new nephew Tomek and will make a concerted effort to include myself in photos. As Napoleon Bonaparte said “a picture is worth a thousand words.”

My very first photo with Eli and Tomek was on June 29, 2008. It was very calculated and like when I first squeezed my mother’s hand and spoke after the coma; I thought a lot about it before I did it. The reality of my appearance might be shocking to some who knew me as I looked before, but I cannot control other’s reactions.
I took a picture with Jeff and Bambie (friends of my parents) and my parents at their wedding anniversary dinner. I was resistant but I am glad I did it. In addition to creating a fond memory it was the best picture I have taken. The symmetry in my face is very encouraging. In the past, passport and medical pictures were quite wonky.

In an article I wrote called “Double Standard?” I say, “Most pictures we choose to represent ourselves are inaccurate, right? Most of us cannot stand our driver’s license or passport pictures. May as well be a movie-star or look like the old me. Drag-identity is liberating. As I will often explain, to me “drag” is not “cross-dressing.” “Drag” is about layers of difference. I find “otherness” preferable to sameness. If my disabilities put me on the fringe – great. If the way I think belies convention, so be it. I am glad that I have a PhD but I do not fit or follow a conventional model of that at all. My “difference” permeates many aspects of my being. The ways in which I present identities now are not false, they are drag.” Identity and image are changeable.